Saturday, October 31, 2015

A Transplant for the Cure - Complications and Cancellations

Ellen Maxwell, R.N. Blood and Marrow Coordinator.
University of Kansas Cancer Center.
Karen contacted the KU Bone Marrow Transplant Clinic and told them that she would like to move forward with preparations for a stem cell transplant. I received the following email from the transplant coordinator on October 1st:
I  hope this finds you well.  I have just spoken with Karen who informs me she is willing to proceed with the transplant.  Are you still on board with donation? 
 She is coming back to discuss her decision with a physician  within the next few days.  They will be very firm about her commitment to this treatment. 

If she feels ready to commit we would be able to proceed with her pre-transplant work-up  within a few days.  
I am looking ahead to some potential dates…if you were here for your labs, etc on 10/19, Karen would consent on the 22nd and admit to the hospital on the 23rd then transplant ( and your collection) would be on the 29th.  You could travel home the 31st.  Your neupogen injections would be the 25th thru the 28th.
Please let me know your thoughts and please let me know what questions you have!
I was just recovering from a stomach virus when I got this email. I didn't think Nurse Maxwell REALLY wanted to know my thoughts on this day. I was disappointed that the medical tests that I had done in May would have to be repeated. That meant I would have to be away from home for two full weeks.
I reserved a ticket with Southwest Airlines to fly from Houston to Kansas City on October 17th and return on October 31th. I found that reserving flights with only two weeks advance notice could be a real challenge. I searched for an open flight that would not cost me an arm and a leg. I settled on a ticket flying from Houston to Kansas City via Chicago and flying back to Houston from Kansas City via Denver.
On October 13th, I was shocked to get the following email from Nurse Maxwell;
I am sorry but I am going to ask you to delay your arrival and I am cancelling your appointments for next Monday.  During the team meeting this afternoon this decision was made by the physician team.  I will let you know as soon as I can when we will be able to reschedule.
I called Karen to ask her what was going on with the schedule. She said she didn't know anything about this cancellation but would get back to me as soon as she could get some information.
Karen discovered that she had missed an appointment with a doctor the day before. The problem was, this appointment was not on her printed schedule. The clinic said they had confirmed this appointment with Karen on the telephone, but Karen did not remember getting a call.
At first it looked like the transplant would be postponed because of this scheduling blunder. This uncertainty was making me crazy. I did not want to cancel my airline reservations if the transplant was just postponed a few days. I made several calls but had trouble getting a satisfactory answer. It was finally decided that they would go ahead and harvest my stem cells on October 29th, EVEN IF Karen was not able to have the transplant on that day. My stem cells could be frozen and used for the transplant at a later date.
I had a good flight to Kansas City on October 17th and enjoyed some time with my family that weekend. Karen and I reported to the Bone Marrow Transplant Clinic on Monday morning. The doctors had reviewed the results of a CT scan of Karen's lungs that had been done the previous week. The scan showed something in her lung that had to be investigated before the transplant could be done.
The doctors decided that there would be a better chance of success if the stem cell harvest and transplant were done on the same day.
This was the second time the stem cell transplant had been cancelled. I was beginning to wonder if this transplant would ever happen. Karen posted the following message on Facebook:
News Flash! Yet another at least 2 week delay with the stem cell transplant. They found what appears to be a fungal infection in one of my lungs, so that must be addressed now before starting the transplant procedures. Pray fungal infection be completely gone in 2 weeks.

I stayed in Kansas City and accompanied Karen to her doctor's appointments this week.
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